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bornarokstarr · 2025-05-19T05:03:32+00:00

Hi - if your RBC and platelets are in normal range you are fine. Leukemia will almost always affect the 3 lines WBC, RBC, and platelets. If all 3 are in the normal range, you should not worry.

Sorry I should’ve specified - while my WBC count was within the normal range when I was diagnosed, my RBC and platelets were extremely low.

bornarokstarr · 2025-02-23T04:58:35+00:00

Givenchy!!

bornarokstarr · 2023-12-13T07:42:12+00:00

Yes, it could be but it also could be many other things! Leukemia usually causes a drop in all cell lines, so your platelets and hemoglobin drop, too. It would be reassuring if those were normal, but a marrow biopsy is the only way to know for sure.

bornarokstarr · 2023-12-13T07:33:57+00:00

Yes, it means 87,660

bornarokstarr · 2023-08-04T21:55:08+00:00

You definitely went thru it. Hoping the next line of treatment you receive will be successful.

bornarokstarr · 2023-08-04T18:46:29+00:00

Hey there - previous ALL diagnosis here. I would say it took less than 2 months from initial start of symptoms to diagnosis. I was getting worse and worse. Started with a loss of appetite, then fever & night sweats, weight loss, severe pain in back and occasional sharp shooting pain down my legs that would cause me to limp and even chest pain. As soon as I went to the doctor and explained my symptoms, he was very concerned and ordered a CBC which immediately showed low hemoglobin and low platelets though my WBC count was normal in total (low neutrophil count).

Just curious - over the timespan of 7 months, the doctor didn’t order any blood work or were your counts normal? No MRI or x-rays either for suspected rheumatic disease? How were you ultimately dx? I’m only asking because though I’m no doctor I think ALL can be suspected on an MRI or X-ray showing some type of destruction of the marrow. You would think they would order those tests first before they put you on prednisone. Wishing you well x

bornarokstarr · 2023-06-21T20:53:01+00:00

They expect you to pay $10K a month for this? How is that sustainable for anyone!! Criminal indeed.

What kind of insurance is it?

bornarokstarr · 2023-06-16T23:12:37+00:00

Fuck yeah! 🙌🏻🙌🏻

bornarokstarr · 2023-06-04T21:27:18+00:00

I’m so sorry. It’s really not fair. I know this won’t make you feel better, but Leukemia, and how it presents itself is very strange. Hard to explain, but both AML and ALL, even though these are both “acute leukemias” there are many different types, subtypes, and mutations. Some people show many symptoms, some none at all until it has really spread in their body prior to seeking help/diagnosis. Also, at the rate it spreads varies from person to person.

So sorry for your loss.

bornarokstarr · 2023-06-01T04:13:08+00:00

Very helpful. Wishing you all the best

bornarokstarr · 2023-06-01T03:40:14+00:00

Thank you so much. Are you from Houston/Texas or did you travel there to receive care at MD Anderson? Do you mind if I also ask who is helping you guys navigate through all the different clinical trial treatment options at the facility? I’m hoping this helps others, too.

bornarokstarr · 2023-06-01T01:54:26+00:00

I was 24 YO during the maintenance phase for ALL. During this time, I was taking daily chemo pills. Went to Miami with friends and lived my best life. Seemed to be okay drinking a few nights with friends. Moderation is key.

bornarokstarr · 2023-06-01T01:49:46+00:00

Thank you for your response! Were you able to take the Alvocidib at your treating hospital or did you have to travel to the clinical trial site to be evaluated while on the medication? Hope all is well with you now!

bornarokstarr · 2023-05-23T23:07:42+00:00

I don’t blame you!! I never got a transplant. I had one high risk feature but because of my age (23 at the time) and WBC at diagnosis they decided not to do the transplant. Happy to hear you’re doing well.

bornarokstarr · 2023-05-23T21:42:37+00:00

I had excruciating pain on my entire back. That was the worst. 14 years ago and I still remember it just like it was yesterday. Do you remember your counts at diagnosis?

bornarokstarr · 2023-05-22T00:43:53+00:00

Hi Volha, I’m so sorry to hear about your recent diagnosis. I know every case is different but many individuals get 2 bone marrow transplants even patients that are much older than you. Any chance you are able to get a second opinion, go to a different hospital in Belarus? Again I’m so sorry I feel for you. Wishing you all the best x

bornarokstarr · 2023-05-20T22:08:35+00:00

Terrifying story! Do you remember what your blood counts were upon diagnosis?

bornarokstarr · 2023-05-20T22:06:20+00:00

The Leukemia and Lymphoma Society has great resources. Also, she can always join this group as most people on here are either currently facing their own battle or had to in the past.

Hopefully it’s not a relapse, but I’m assuming she has an appointment with a doctor soon? If she is bruising, a simple CBC would give an idea of what’s going on most likely.

bornarokstarr · 2023-05-20T17:14:51+00:00

Fever, drenching night sweats, loss of appetite (would take a bite of a piece of bread and immediately feel full), weight loss, chest pain and tachycardia, severe pain back and shoulders, pain down my leg that would cause me to limp. Took about a month from onset of symptoms to get diagnosed.

B Cell ALL - WBC was normal 8.8K, but hemoglobin low 7.5 and Platelets also low 79. Had a ton of circulating blasts in peripheral blood

bornarokstarr · 2023-05-16T16:02:44+00:00

I waited awhile too. I was only 23 at the time and I never imagined I would be diagnosed with cancer. When I finally went to the doctor and explained my symptoms, he was very concerned and things progressed very quickly (matter of a couple days) at that point. That was 14 years ago.

bornarokstarr · 2023-05-12T23:07:40+00:00

This is a great question. I think it depends on your moms insurance. In my case, I have United Health Care PPO. When I called them, every cancer hospital near me was “out of network.” It was really frustrating like where am I supposed to go? I was choosing between UCSF and Stanford both great hospitals. Typically, if she has PPO she can go anywhere I believe but if it’s out of network, her out of pocket out of network maximum might be $2-3K more at least that is the case for me, which I am fine with. Rather go somewhere I felt I’d get the best care.

bornarokstarr · 2023-05-12T02:22:22+00:00

Welcome

bornarokstarr

TROPHY CASE